I played a Kinks concert live at the BBC from 1973 on you tube for James--hooked the laptop to his portable speaker and blasted out the NICU.  It made me cry but I think James appreciates it in there.  We attended a few Kinks concerts in and around San Francisco and Oakland--at one of those concerts, I was pushed against the stage and so, for fun, I reached out and touched Dave Davies's foot, like a fan should do. I was not exactly a Kinks connoisseur but James definitely had a passion for them so I sung along with Lola too.

James was scheduled for the tracheotomy today but it looks like it will be pushed to tomorrow morning.  They did remove the central line from his neck (a kind of port for taking blood and delivering meds) which leaves only one in his arm. They are slowing unplugging him!

The neurological team did their rounds this morning and performed another dye test in James's brain. It appears that the defect has resolved or it was not really present in the first place. The dye test will confirm that he's doing well on that front and they will remove the drain from his brain if that's the case. The infectious disease team also weighed in. They will remain with the current two antibiotic treatments. We are all in a wait and see mode. The infectious disease team doctor mentioned to me that the neurological team is pushing them for a "timeline" for resolution of the infection. It was nice to hear that we, family and friends, are not the only ones that are impatient and wanting more information!

I am a bit tired today. I had a strange dream last night about visiting an elderly couple living in suburban upstate New York--a warm old fashioned interior--there was a walnut paneled dinning room table gleaming with silver serving dishes, a sunken 1970s type living room with shag carpet and bean bags and lots of adopted children. It was pretty weird.  I woke up to see my cat B staring at me in bed. 

When James and I were in college, we lived in a detached cottage that was situated in the backyard of a house that had a wrap-around deck owned by a quadriplegic woman named Sharon, now passed away. Part of the rental agreement was that we would be on-call for Sharon on the nights that her live-in attendant was not at home in case she needed us to adjust something for her.  We would also help her out in the daytime, if we were studying and around, and she caught us at home. One afternoon, she rang us up, sounding frightened, and asked us to come around.

Her house was very light and airy, open kitchen, hardwood floors, happy plants, artwork and french doors that opened out into a garden. Her door was usually unlocked and she had a variety of friends and helpers that visited her during the day. She was confined to a chair and could only move it with a device connected to her chin--a kind of joy stick. 

At the time of the call, the attendant had gone to the store and Sharon was lying in her bed. We let ourselves into her sunny bedroom, spring breeze coming through the window and she said, "Do you see anyone out there?"  Who, exactly, was Sharon concerned about. "The clown," she explained, "Did you seen the clown, white face, stripped suit, orange hair?"  We did not know what to make of it. We looked around the house like the good kids we were for the clown--not one oversized shoe to be found. We informed Sharon that we could not find the clown and she looked relieved.  A few days later, I told her live-in attendant about the clown, seriously worried that we should probably lock Sharon's door (there were quite a few oddball characters that lived in our Berkeley neighborhood). The attendant laughed at me. She said, "Girl, Sharon was tripping--she dropped a tab of acid!"  I was so shocked!

I thought it was amazing that Sharon would drop acid and asked her about it.  She told me she would leave her body, fly around the room, just have a great old time of it.  I had this preconception about her because she was disabled and had this very regimented life of routines, of being cared for, carted off to doctor's appointments and never really being free of her disability.  Sharon's life was rich, even without the acid enhancement.  She shared her life with us and we were made the better for it. I recall being slightly frightened of people in wheel chairs or with disabilities before meeting Sharon. She was an artist before she became ill. She created a way to make artwork using her computer and movements with her chin--and this in the early days of technology and home computers--we have a piece of artwork she made for us framed on our wall in Greenpoint.

Thinking about Sharon has given me strength for the prospects of a disabled future with James. Of course, we all hope for a full recovery but in the event he's not made whole again, I know, that we will face those challenges together.  I hope to leave off the clown sightings though.